The “top story” in the September 17th Newsweek is entitled You and Your Quirky Kid and might also have been called “To diagnose or not to diagnose: That is the question.” Writer Lorraine Ali opens the article by discussing her own 4-year-old son who is one among the 13 other kids who, when he is to sing “Let’s All Sing Like the Birdies Sing” for a preschool musical, broke ranks and began marching to his own tune (involving him singing something about “babies and broccoli”). Ali’s son is already “different” at the age of 4, but is he a “nonconformist kid” or does he have—ought he to have—a diagnosis of ADHD or autism spectrum disorder? Is “quirky” enough of a diagnosis and an explanation when your five-year-old boy is fascinated by knitting? Won’t giving a child who is so “borderline” a “label” involving a “syndrome” or a “disorder” result in a permanent stigma being attached to the child? Isn’t it enough just to enjoy one’s child, oddball interests (plumbing, perhaps) and celebrate his or her lovely, different, unique self?
My own answer is “of course yes! but”: If the quirkiness is somehow impeding a child’s learning or making school and, indeed, friendships, difficult, then a more formal diagnosis—achieved through appointments and evaluations with various specialists, developmental psychologists, pediatric neurologists, neuropyschiatrists, occupational therapists, etc., etc., etc.—-may help more than hinder.
Regarding my own Charlie diagnosis—-autism, in July of 1999—was not a question but, as Charlie’s second birthday approached and he had no words or bits of words, a relief and a necessity. With that 299.0 code on our insurance forms and “autism” as a diagnosis, Charlie “qualified” for the services that were the beginning of helping him. (Neither insurance nor the public schools provided all that he needs, but that is a different story.) For us, any sense of stigma in a label called autism was soon erased by the reality of the looks, stares, and complete indifference the three of us received in countless public settings. When he was younger, there was crying, lying on the ground, back-arching (these being attempts at communication in a boy with so little language); now that Charlie is older, something about him (a boy just short of being five feet tall, speaking in telegraphic bursts of “PoPo [Cantonese for "maternal grandmother], school doctor,” looking in other directions for long periods when spoken too: These may well be something more than quirks, and they signal “different kid” in a very few seconds.
The Newsweek article looks at the whole bigger phenomenon of diagnosing children with psychiatric conditions (including bipolar disorder) and of diagnosing children, period. Many of the persons interviewed for the article make statements that reveal societal attitudes about autism, difference, and what we think about childhood today at the start of the 21st century.
Two medical professionals, Dr. Elizabeth Berger and Dr. Perri Klass, speak reasonably about the uses of diagnosis, and also about the pressure to be a “normal child.” “Normality” has been elevated to an end in itself, and even to a spiritual quality in some cases as Berger, a child and adolescent psychiatrist whose books include Raising Kids With Character, says:
“Of course it is a source of deep sorrow when it is obvious that a youngster can never lead ‘a normal life’ because of special needs……”All the same, there is something amiss when every mother is susceptible to fears whether or not this week’s fashionable diagnosis applies to her child. There is something unexamined in our thinking when we elevate the need for normalcy to a state of spiritual grace, and live under a constant anxiety that we fail to measure up to its demands.”
Is normalcy indeed viewed as a quasi-religious value, so that not to be normal—”weird,” “geeky,” “odd”—is a sign of some kind of moral failing?
Dr. Klass is a pediatrician and coauthor of Quirky Kids: Understanding and Helping Your Child Who Doesn’t Fit In—When to Worry and When Not to Worry and reflects on how a parent may find it difficult to distinguish between a kid who likes to go her own way, and a kid who needs more than “just letting her be”:
“Parents need to ask themselves, Is this making him unhappy or just making me unhappy?….. Is he having a perfectly good time in school, but he’s not interested in the things the other kids are interested in? Or is he desperately trying to be part of something but doesn’t seem to understand how? I’m not talking about a child who’s a developmental emergency, I’m talking about the kid who’s different.”
Mary-Dean Barringer, of the nonprofit learning institute All Kinds of Minds, is noted as saying that “we put too much emphasis on the labels that others assign to our kids” and equates a diagnosis like autism as an “aberration”:
“We’re absolutely appalled by this diagnosis of Asperger’s syndrome……..These are very highly specialized minds, and to put a syndrome on it and treat it as an aberration does damage to kids and families. There are still challenges there on how to manage it, but why not call it a highly specialized mind phenomenon rather than a disorder? That label alone shapes public perception about uniqueness and quirkiness.”
I would like to say, or hope that we might say, that an autistic child does have some sort of diagnosis and that he or she has a sort of “highly specialized mind phenomenon.” I do not know what it is that enables my son Charlie always to know when the next wave is coming as he swims in the ocean, or why he cannot really read (and there have been plenty of specialists who have worked with Charlie) and, too, that he is just not drawn to the written word. Charlie’s is a mind that seems especially attuned to sound and motion and the feel of both of these; he does not simply march to a different drummer, marching is not the point for Charlie.
Charlie swaggers and he beats his own drum.